Many people have never heard of a rare genetic condition called Progeria or are even aware of the young lives it claims.
Sam Berns became one of those young lives when he passed away on Friday. He was just seventeen years old.
Berns was not, even until the end of his short life, fixated on the illness. He and his family learned what the condition meant for children like him when he was first diagnosed at 22 months old. Progeria causes a loss of body fat, hair to fall out, and joints to stiffen. The sufferer may suffer from heart conditions and or be vulnerable to strokes. In a sense, Progeria is known for it's ability to age a child far beyond his or her years. Many do not live to the age of thirteen.
Sam Berns' parents, Leslie Gordon and Scott Berns, started the Progeria Research Foundation in 1999. Their work to find a cure for their son and children like him was featured in the HBO Documentary, “Life According to Sam”.
The title was remarkably appropriate. Listening to Berns talk about himself, it is clear he was very much a young man who thought about living and not dying. He was concerned with what he could do rather than what he couldn't.
"Even though I have many obstacles in my life, I don't want people to feel bad for me," Lets all live like Sam did. http://t.co/d29522XukE
— Kristin Bigda (@KristinB_NFPA) January 13, 2014
— Milan Lucic (@MilanLucicCFC17) January 13, 2014
“I didn't put myself in front of you to have you to feel bad for me. You don't need to feel bad for me....because this is how...this is...I want you to get to know me. This is my life.” These words are spoken to us by Sam Berns in the documentary.
He was not about negativity; Berns was about positive thinking. He didn't feel the need for anyone to approach him to feel sorry for him or look at every single day of his life as a series of obstacles. He expanded on this in a brilliant TED talk that must be watched.
What can we learn from Sam Berns? A great many things.
In addition to helping shine a light on the rare condition that claimed his life, Berns has left us with a very strong and unforgettable impression. He has shown that life is a matter of quality, of achieving what you set your mind to, of happy moments spent with loved ones, and taking nothing for granted.
Most of all, we should learn that there is no excuse to live a life of unfulfilled wishes and abandoned dreams that ends in regret. Sam Berns didn't put his life in front of us with the expectation that we feel sad that he didn't live as long as we have or will; he allowed us to know what it feels like to be indomitable to the point where even in the face of death, all you ever focus on is your happy life.
Image via TedxTalks